Children's Garden

September 5th, 2008
We met up with some other moms and kids at Children's Garden on Friday. The coming hurricane Hanna had cooled things down a little so play outside was bearable. Sarah had a good time walking around. She promptly fell asleep in the car. After that she had her first real fever because of her shots on Thursday at her 1 year well visit. Thank God it didn't last very long. She was 20 lbs and 13 ounces (with diaper) and 30 inches.

She picked up some sand and put some on another kids and kept it moving. I don't like this sandbox so I was ready to move on too.

Most of the place is downhill so Sarah was running because she had no choice.

She sat down for a little bit and felt the grass.

Good Doctor's Visit

Hi, All.

We visited the genetic specialist on Friday and Ron's summary is below. Sarah was 11 pounds and 7.8 ounces and 22.8 inches. I am recovering from vertigo and your prayers are working and appreciated.

With love,

Charlene

Re: Today's Dr.'s Visit 11/2/2007 A Report from the Genetic Counselor‏
From: Ron

Hello all,

We went to the genetic counselor today and Sarah received another clean bill of health.The doctor diagnosed Sarah with a condition known as split hand split foot. This condition has a wide variety of ways that it presents itself in people. In Sarah's case, she has an isolated case and it does not appear in her foot.

In other cases, people also have things like heart murmurs, kidney problems etc... Sarah is a healthy baby and doesn't have these problems so for that we are thankful.

Genetically, there was no testing the doctors could do of Sarah because so much of that area of the hand is unknown today. What they do know is everything occurred as it should have in her left arm and left hand, but when her growth got down to the fingers there was some signal that didn't get turned on in her genes. The doctor said this could have been due to some pressure on the hand caused by amniotic bands but she felt that wasn't likely since it didn't effect the other fingers of her hand. So the only explanation we have is that the genes for those fingers didn't turn on so the fingers didn't grow.

As far as Sarah is concerned, the doctor said she would be able to play basketball. Charlene asked if the left hand was more sensitive and the doctor said no. She also said that by the time Sarah is ready to have children hopefully they will have the genes of the hand mapped out and will be able to give Sarah percent chance she will have of passing this to her own children.

Attached are X rays of her right hand and left hand.As you can see, in the right hand there are 3 bones in each of the fingers and 2 bones in the thumb. In the left hand, she has 2 small bones in her pinky finger and according to the doctor there are two bones in her pointer finger.

As before, the doctor said she will be fine, there was nothing we could have done to prevent this and she will gain a lot of functionality in her hand because she can grasp things with her thumb and other fingers.

The doctor also said that the chance of this happening if we have children again was very small so we shouldn't be worried about that.

We are happy and Sarah continues to grow she was 75% percentile in height and weight and 50% in head circumference.

God bless.

Ron

Good News

October 1st, 2007 - Conversation with Daddy

October 2nd, 2007 - Look How I've Grown

Good morning and Happy Glennis' Birthday yesterday!

Sarah had a visit with a Specialist at the Children's Hospital on Thursday. I have included Ron's summary below. Sarah weighed in at 9 pounds and 13 ounces! That's 13 ounces in 10 days! I can see her growing. Her cheeks are filling out. Her thighs are getting thicker. Her belly is plump. She's getting longer. My baby! :')

Sarah slept in her room last night. In her crib...big crib. Mommy couldn't take all the "talking" in her sleep anymore. I was exhausted and decided that maybe she doesn't like the bassinet. I don't know if she was quieter but I got some sleep. Ron was up a lot of the night with her.

Ron's Message:
Hello all,

Sarah went to a specialist today to get an opinion on her hand. The visit was positive and Charlene and I are happy about what the doctor said.

The first thing the doctor talked about was functionality. He said that for hand function 40% comes from the thumb. Sarah has that so she has a lot of her functionality already. The second thing he looked at was her ability to pinch and pick up stuff. With all three of the fingers on her hand she can accomplish that.

He felt like given the functionality she has with her hand he guessed that at some point she would be able to do everything with her left hand that she does with her right. He also said that this increased the possibility that she would be right handed but that she still could be left handed.

Overall, he had positive things to say about her hand. In some cases, what they have to do is move fingers in order to give children a thumb or the ability to pinch, in Sarah's case we don't have to do that.

As far as long term growth he said that we should continue to encourage her to use the hand and grasp stuff. He also said that she didn't lose her fingers as an adult so it wouldn't be like she was relearning how to things without those to fingers on her hand.

We have referrals to go to the geneticist and the dermatologist. The geneticist is to eliminate the possibility that this was somehow genetic. (This is for treatment options and in case we would like to have other children.) The dermatologist was to get more info about her acne which we aren't as concerned about but wanted to go see just to see if they would say anything different from the regular doctor.

I almost forgot to mention that he said at some point when she is older we may want to get a prosthesis for aesthetic value. He said around the age of 5 or 6 is when children will start to have questions and we may want to consider that option then. I guess that will be our biggest battle dealing with the questions and the stereotypes people have of her.

Ron